Out of the Shadows: A family's struggle to find normalcy for their mentally ill child

A family takes great strides to provide for their bipolar son

October 24, 2011

By Aurora Aguilar

Joey's family works together to provide a support network for the bipolar teen.

Thirteen-year-old Joey likes to rescue toads and climb trees.

"The tallest tree I ever climbed actually bent over when I got to the top," said Joey excitedly. "That’s what’s really funny, I have the fear of heights, except that I’m not afraid, maybe because it’s just nature. When I’m up in trees, I’m not afraid but when I’m climbing a rock wall, I’m afraid."

There are lots of trees to climb around here, so far north in Illinois. Here, city dwellers retreat to lake homes where it’s so dark at night that Joey sees plenty of stars.

"I just look through binoculars. It’s not like a big city like Chicago where the lights of that city dims the stars."

Joey is an aspiring astronomer with a blond buzz cut and glasses that fall down the bridge of his nose. But his interests aren’t the reason his parents moved him and his two younger sisters and younger brother to this quiet rural place more than a decade ago.

"Looking back, he was always very agitated," recalled Joey's mom, Julie. "We could watch him inside my belly, like wham! one side of my stomach and wham! back to the other side."

From a young age, Julie could tell her son was different. "When toddlers were getting out of biting, his was getting worse. He came up and bit me on the leg. He would have rages and tantrums for 40 minutes at a time. We’d have to hold him down because he was trying to tear our hair out at the scalp and gouge our eyes out."

"We didn’t want him to be prejudged, so we let him fly under the radar. But the first day at the preschool, he punched the teacher in the eye."

Joey's violent tendencies were troublesome. "When [he was 2] his younger sister was born and as she started getting older, we lived in a two-story house with a banister railing at the top of the stairs and we could see him pushing her over. So, we bought a ranch. We need to buy a house where we don’t have to worry about his jumping out of a window."

Julie and her husband Tom thought early on that Joey might be bipolar. The illness, also known as manic depression, is a brain disorder that causes severe mood swings and can make children aggressive.

"He would get a feral look on his face," Julie recalled. "150 years ago, people would have said, 'he’s possessed!'"

Both Julie and Tom’s fathers lived with bipolar disorder, so Julie, who has a degree in psychology, started to keep track of Joey’s symptoms.

They began videotaping Joey’s behavior. Julie says they wanted to protect themselves from neighbors who raised their eyebrows at the violence in their home.

They also wanted to show doctors. They were going to countless visits to find out what was wrong. Some pediatricians they saw said children cannot have bipolar disorder. Others said Joey just needed more discipline. All of the doctors stayed away from prescribing drugs, pointing to the lack of long-term effect studies. Some offered alternative treatments, like fish oil tablets. But Julie says that choice proved problematic.

Joey, meantime, was having nightmares. "It would be one big dream where someone would stab me in the stomach and I would wake up screaming. Waking everyone up. It happened every night until mom and dad decided to give me pills."

Diagnosis

Then Joey, Julie and Tom visited Dr. Mani Pavaluri from the Mood Disorders Clinic at the University of Illinois in Chicago. She diagnosed Joey with pediatric bipolar disorder. "He has this very clear depressive episodes where he would say he wanted to die. He was saying that at the age of 3 years and to make matters worse, the medication treatment wasn’t perfect. He was on two mood stabilizers and none were on right doses."

Julie says a series of medications began to stabilize his behavior. "Mood swings became more predictable. Based on seasons and stressful situations like school year start. But every day is anybody’s guess."

Several families interviewed for this series describe living with someone who is mentally ill as constantly walking on eggshells.

Out of the Shadows will explore the fractures in mental health care for children in Illinois and illuminate how it affects our youth.

"On the one hand when things are great and stable, you use the typical stuff, discipline and consequences and all of those things. But when you have a bipolar kid and he’s on some biochemical swing, you’re in survival mode. You have to keep everyone safe. If that means you let him watch TV for 8 hours, you do it."

Joey has learned some skills to control his own anger. He goes to his bedroom or squeezes a stress ball until he calms down.

"Sometimes I think that I go into mood swings when I feel totally happy and confident and then I’m down in the dumps" Joey said. "I start hating myself, I think I’m a despicable person. I have ups and downs, like a roller coaster of emotions and I can’t stop it."

Navigating that roller coaster is a central focus of the family’s life.

On a bright summer day, Joey, his sisters and his brother are visiting Brookfield Zoo with their parents.

The children are 13, 11, eight, and five and they’re bouncing with excitement, but as they pass a kiosk, Julie stops for a woman handing out information on college savings plans.

Adapting

"I have a plan for each of them already," Julie said proudly.

Julie isn’t going to miss an educational moment. This fun excursion is also a school day. She’s been homeschooling Joey for more than a year.

While some kids with bipolar disorder thrive on structure and discipline, Joey did not.

"We didn’t want him to be prejudged, so we let him fly under the radar. But the first day at the preschool, he punched the teacher in the eye."

That got him kicked out of preschool. In grade school, Joey spent lots of time in detention and the principal’s office.

"Well, I’d basically thrown a chair cause I was so angry. They had to come in and restraint me. I just kept throwing chairs and stuff. At public school, they didn’t understand how my brain works."

Julie says that academically, Joey’s brain worked well. "Intellectually, he was already reading books. He should not have been in special ed. But he can’t be in the main classroom when he’s having behavior issues," she explained. "He has a one on one aide in second or third grade." [The] aide would manage his mood swings. third and fourth grade, he would get suspended five to eight times a semester."

So, Julie Tom helps out sometimes. He’s a software engineer who works from home. Although no one tends to stay home a lot. They’ve got homeschooling co-op, scout meetings and outings like this one.

Joey is looking for an elephant. The closest he comes to it today are hippopotamuses.

Joey reads the plaque: "Chocolate toads from Harry Potter! Eat it!"

Harry Potter, Doctor Seuss, Percy Jackson and the Olympians--all four kids drop literary references. Joey likes to brag that he tested at a sophomore-in-college reading level while in 5th grade.

But while at school, his younger sister Sarah often takes a more mature, protective role. The changes the family has made for Joey don’t seem to make them feel abnormal in any major way. And this family is happy, loving and fiercely loyal to each other.

And to have that kind of acceptance cushions the world for Joey. Still, however, he yearns for friends.

"Usually I just let them come to me cause sometimes I approach too fast and I get a little head strong and I intimidate them a little bit. So I usually let them come up to me. Sometimes I just go too confident. I get a little bit too intense and then they get a little scared of me."

Tom worries sometimes about how Joey’s protected upbringing will affect his future.

One of the books that our son enjoyed as a child was Pinocchio. He saw himself in that story. Always in trouble and always working his way back," explained Tom. "He identified with it cause he wanted to be a real boy. It’s difficult to get past things to be the boy his mother wants him to be. Son is little Pinocchio... Things you have to overcome but will."\